Tuesday, February 26, 2013

She does NOT need to be coddled because of her intellectual disability. Coddling and understanding are two vastly different behaviors.

I'll say it again:

It does NOT make you a good, tolerant individual if you accept my kid because she has Down syndrome.

And again:

Having Down syndrome does NOT mean she should be treated in any specific way. She should be treated according to her particular personality, behavior, and skill set.

Once more:

She is no more different than any of us are. She is just as different as all of us.

Maybe you didn't catch me the first time:

She should be fully accepted and included by everyone because she is a fellow human being and until she proves that the acceptance and inclusion were the wrong things to do - let's say she robs a bank at gunpoint or poisons her elderly yet wealthy husband's plate of porridge - and has to be removed from society into a prison, she should be accepted as as much of a member of society at large as you and I.

Deal? Am I getting through? Can we agree on these simple details about who is human and who is not and what that means, and get on with the posting of pictures of Babe covered in food, or playing with her pretend aquarium? Yes?

This is someone going to places (or at least the kitchen) as long as you let her.

Wednesday, February 6, 2013

As I am typing this I look at Babe. She's crawling around, getting to the drawers on the television stand and pulling out DVD covers (she has a good arm on her as far as flinging stuff goes), moving onto the magazine rack and testing out her 6 teeth on the corner of a 5 month old People magazine (I really should clean more), bear crawling it to the staircase and pulling to a stand at the not-so-securely mounted gate (we have no business owning this house), every once in a while glancing at me, smiling, waving, calling out to me and to her surroundings in general.

You know, spooky stuff.

Yeah. I can see why she'd be dangerous, with her stealth crawling speed and unwavering focus that can in no way be upset by oh, I don't know, calling her name or rattling a tube of puffs near her face.

Scary as hell. This little girl of mine.

Oh, it's not her you say? It's the Down syndrome. It's not her, she's not frightening, just that extra chromosome in every single one of her cells. Makes sense. Completely separate from her - that foreign material. Oh wait, it's not foreign, it's the exact same make-up than those other two 21st chromosomes. Not foreign at all. Just more of that cell-y goodness that makes her, well, her.

But babies are not scary. No way, they're cute, that button nose is adorbs, you interject.

Fair enough. Fast forward to her at 19. A young woman, possibly not quite as tall as her Scandinavian (this means quite gigantic in a nice way) parents, very possibly with pale blond hair, and sparkling blue eyes. She'll most likely be pretty loud and like to have the last word (or sound if she isn't verbal) in any situation. I'm betting she'll have a quirky sense of humor (we can see that budding already), and she'll probably still be rocking a pair of frames. She might be into art or music, or, shudder, sports. She'll have friends and a family who think that she's awesome when she's not being a pain in the ass know-it-all (drawing from experience here, people).

Scary now?

Shit! Wouldn't want to meet her in a dark alley.

Now you're just being facetious, you say.

And you're right. And I realize this is not something to be taken lightly.

I know you don't fear my child, but I wish you didn't fear Down syndrome either. It is a part of her. It makes her who she is, Her Babeness can never truly be divorced from her having Down syndrome. I honestly believe that without that extra chromosome she would be a different kid.

I don't love her in spite of her Down syndrome, and I don't love her because of it, I just love her. And I wish everyone else did too.

That's why I get really angry sad when I see an article like this (I'm linking straight to the second page because that's what's really got me in uproar).

Let's make a few things clear here. Down syndrome does not have to be a hurdle unless there is some need for a speed of development that is the species-typical statistically measured average (an empty statistic, for zeussakes). Having Down syndrome does not mean that you will also develop leukemia. There's a greater chance, but that's all that it is. In fact a condition called life comes with the risk of many health conditions, and I hear living, and living well, makes everything even worse. Accomplishments and milestones are not what life is about, at least not for me. For me life is kisses, decadently ripe avocados, a good run, smiling, black coffee, celebrity gossip, humming along to music, sunrises, the smell of rain, a scraped knee, unconditional love, wine, friends, a tiny little puppy, newspaper ink on fingers, and so much more. Anything else would just be silly. Having an intellectual disability does not mean that a person will get abused. In fact, I find it insulting that any of the discussion would focus on those who might get abused instead of those who will abuse. To me a discussion like that is akin to saying that rape is somehow linked to the people who were raped instead of the rapist (as in women who wear short skirts...). And that's more than silly, that's disgusting. Discrimination, judgement, and hatred towards people with Ds are in part fueled by the misconception that people with Ds are somehow different from the 'rest of us' (different is good, it's just that we're all different, not that people with Ds are different together from the 'neurotypicals') or 'inferior' as in not conforming to the species-typical standard of development, of being (read with a dripping sarcastic tone, thanks). Lastly, according to studies, parenting a child with Down syndrome makes a marriage stronger, not weaker, unless you have a crappy attitude about your offspring. A crappy attitude will likely kill a marriage, any marriage, or so I've been told.

Sheesh.

I'm glad I've joined a revolution for getting rid of the bad, bad rep Ds has in the world today. Want to help? You can join too. Right here at Down Syndrome Uprising where we're all about highlighting the kind of crap that fuels the fears and responding to it in a (more or less) civilized manner (no restraining orders yet, and I'm kidding, I am*). We want the world to see individuals with Ds as we see them - individuals, equal to everyone else. Not as a separate group to be babied, looked down upon, put on a pedestal (no special angels at DSU), oppressed, stereotyped, marginalized, or referred to as them (you know the tone).

*For later legal purposes

So if you're a hard ass like us who won't let crap slide, we'd love to welcome you to the fold (or does that sound like we don't swear, because if it does that's not the way it was intended [pun very much intended]).

About Me

A child of a global world, originally from the land of Santa and cell phones, married to a bona fide viking, and attempting to raise a loud little life who has Down syndrome, all the while getting used to the US Pacific Northwest after many years in Latin America and Africa. Against all odds the kid's first words turned out to be 'mom' and 'book' instead of 'fuck' and 'no'. That may well turn out to have been my finest parenting moment ever.